Tales from the Ward Chapter 39 and 40

Chapter 39: A Cacophony of Disapproval

I’m in the physio gym with Pilar my physio. She’s trying to prod my outstretched legs to lift up. Come on come on, she says as she lightly prods my ankle into action.
I’m breathing pretty hard considering how simple this exercise is to an able bodied person.
In the process rather than grunting like a weight lifter with the effort I’m emitting a small squeal like a deflating balloon.
Across the room Noelle is demanding her training record to be marked with a gold star for every five second period she keeps her legs separated. She’s up to four and a half. And argues for a five. It seems petty but her childish expectations are becoming familar. It motivates her. I know how hard I’m trying to get even 10 millimetres of air under my leg so I can’t really criticise.
She starts singing another of her unrecognizable off key pop songs.
Giovanni is moaning his physio Alessandro is hurting him, like most days. But he joins Noelle in a tuneless duet. The performance makes me groan.
Steph doesn’t like me singing, Noelle proclaims.
No please stop.
Giovanni laughs and begins to serenade his gym partner been louder.
Down the corridor i can hear faint yelps from someone’s therapy dog.

Chapter 40: In the bleak mid winter

You know the day is going to be less than tropical when even your catheter’s night bag contains ice crystals.
The radiator is on at full blast but It’s not cutting into the chill.
Accuweather says It’s only two degrees outside with a ‘real feel’ of minus six ie fookin freezing, felt even more because I’m unable to move around and it’s my first winter in 21 years.
In the summer I could happily sleep with just a sheet over me, sometimes not even that. But as the year has progressed the amount of covers have increased with it.
Last night’s layers were socks, sheet, polar fleece blanket, and wool shawl over my legs. When even all that couldn’t stop me shivering the staff had to dig out a duvet for me.
Now at midday the temperature is a steamy six degrees (real feel minus two) and having prised me out of my nighttime layers into fleece lined trousers a fleece jacket with wool shawl on my legs I’m seriously thinking about my fingerless gloves to keep my hands warm.
Earlier this year I expressed an interest in a Loughborough University study on how heat affects people with MS. The chief researcher wanted to know if cold affected me in the same way.
I can definitively say yes.
My nose is dripping like a wet dog’s.
And it’s not even really winter. Yet.

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More Tales from the Ward…

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New challenges, old problems, familiar faces

Chapter 35: The return

Three and a half months after being kicked out of rehab I’ve arrived back in the clink.

This one though is a specialist Neuro centre, where positive reinforcement helps even the most afflicted.

Stroke victims, people with brain injury and others with yet to be diagnosed odd things.
I’m reunited with quadriplegia who’s been taking her first tentative steps.

As we meet I eye the can of Pepsi she’s drinking and able to hold by hand.
My first words: You can cut that shit out.

Good to see you too sweetheart, comes the reply.

It’s good to see her up right and able to move rather than flat on her back feeling nothing.

The rehab centre not only makes sure she gets out of bed, she’s been allowed out the building to a rock concert and even a few bars. Not that they’re encouraging her to drink, she doesn’t.

It’s cold now and dark early. Sun’s up gone seven and down just after four. Winter is upon us, and up north there is snow and frost. Actually everything’s been cold since ambient average temperatures dropped below 25 degrees as far as I’m concerned.

It genuinely is freezing and I’m wearing leg warmers for the first time in 30-odd years.

Facebook is trending the best Xmas ad and it’s not even December.

The food looks similar to the other hospital, though there’s a supermarket across the road just in case.

There are four branches of wards all leading off from the central reception. It’s not quite Prisoner Cell Block H. But I can’t help thinking Open Prison and doors to the outside are in fact locked. Actually I can’t even get out of my wing. My unit is secure.

I’m in the complex care section and my room is on the quiet side.
I can still hear Mitchell shouting from the other.

 Chapter 36: The United Nations of nursing

Good job I’m not a racist or Brexiteer. Don’t think I’d be able to cope.
One week here and so far I’ve met:
From Africa: 1 Nigerian 2 Ghanians 1 South African 1 Cameroonian 1 Moroccan 1 Mauritian
From Europe: 2 Poles 2 Romanians 2 Lithuanians 1 Latvian 2 Greek 2 Spaniards
From Asia: numerous Filipina
The Brits are most definitely in the minority here.

I am of course aiming to be fluent in several other languages by the time I leave 😊
Mastering the basics of course is just the start.
So in no particular order and spelling definitely incorrect:
Thank you
Achòo (Lithuania)
Mee dasi(Ghana)
Salamat P.o (Philippines)
Nkosi (Xhosa)
Ashima (Nigerian)

Polish I have no idea but I’m sure there will be a combination of consonants including a Z.

My daily ritual up at 7 breakfast at 8.30 the first of two physio sessions.
In the morning it begins with stretching and then improving muscle strength. There is no CAN’T only TRY. The attitude of the staff is only to give positive reinforcement not chastise when a patient says something negative.

It’s polar opposite to how I’m perceived in the state health system.

Yesterday I watched as a stroke patient refused to work any more because his leg hurt. Was it really hurt or just tired? Even the patient wasnt sure. They listened and distracted him sufficiently to then suggest he work again which he did without complaint.
The attention is constant and detailed.

Therapy is not just physical but also psychological.

I find threatening the physio with violence motivational, but generally just met with laughter.

Later in the day I have occupational therapy to strengthen my arm and work on the fingers of my left hand. My index finger is mostly curled making pen holding almost impossible.

We spend about 20 minutes on this finger alone aiming to stretch it to its full length and extent my entire palm. It’s tough and I wonder if it’s worth it but the following morning my hand and fingers are straighter.
Now to repeat several times a day every day.

Chapter 37: New characters old problems

Noelle had tried to commit suicide by gassing herself.

The build up of carbon monoxide in her blood failed to kill her thankfully but left her partially paraplegic. She can stand, lucky her, with encouragement, but is full of anxieties.

A perceived sleight when things don’t go quite to plan often results in a childlike meltdown and tears.

Reassurance is needed. Often.

Her husband has taken her credit card. Liberal spending on Amazon was becoming expensive.
But she gets it.

Steph’ s ok she declares. (Phew) She’s one of the few non crazies here.

Top of the driving every one else crazy is Mitchell. Constantly pleading: let me out of here!
But to look at him it’s hard to know if this is a request to escape the ward or escape the body he’s now trapped in.

His speech is slurred I guess from a stroke and it’s quite hard to understand him. He seems acutely frustrated. Why is he now in a wheelchair and not able to communicate well?

Perhaps, in true British style when addressing foreigners, he’s thinking: If I say it loud enough long enough people will understand me.
Why do they just tell me to shut up?

At lunch he takes a few mouthfuls, claims he’s no longer hungry and wants to return to his room. In the next moment demands he wants to eat again.

Cliff is not allowed seconds. He’s very over weight with a 9-month belly and has been told he must lose the excess kilos. He is another of Carol’s husbands who responds to ‘how are you?’ With ‘same shit different day’.

I know that feeling. He’s also in a chair, the result of a stroke brought on after watching a football match. He can’t remember who was playing or who won.

Chapter 38: Physio

I’m sure Djokic is happy the bean bags I’m throwing at him are soft and not made of brick.
He seems amused by the fact I’m aiming for his head.

Is he really just a sadist masquerading as an Occupational Therapist or just someone who enjoys the challenge of trying to piss me off.
Oh wait, isn’t that the same thing?

He grows quiet when I mockingly suggest he has a darker past. Is that because he does, or that maybe he doesn’t share my sense of humour? Maybe it really isn’t funny? Jokes don’t translate well, I find.

Anyway, I’m throwing the damn things as far as I can – and that’s with my good arm.
I’ve never had the speed of a baseball pitcher and the bags are barely aerodynamic so there’s a cat in hell’s chance of me making contact.

Plus he artfully steps out the way and out of range of the soft touch slow-moving missile.
The smirk on his face as I screw mine up in frustration just makes things worse.

After this there’s the bending forward in my chair to see how far I go before I face plant exercise.
I swallow my desire to call him an utter bastard because I know that will only make him laugh.

Then we do the same thing going backwards. I’m meant to pull myself forward using my stomach muscles. His response to my protests of: ‘I’m not a frickin limbo dancer’ as my spine bends back almost at 90 degrees are simple: Go on you can do it.

Not. Effing. Helping.

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Tales from the ward: Ch..ch..ch..ch..changes,

 Chapter Sixteen: Changing Rooms.

I’ve been moved to a shared room. Maybe to keep the geriatrics entertained but it’s a tough crowd when the three ladies are either asleep or semi comatose.

Next to me is Betty, who I met at lunch. She’s unconscious, but her shirt has changed since then. Victim to the fruit crumble and custard she’d had for dessert.

Opposite me is Sheila, born in 1932, reading a magazine but keeping a close eye on the activity or lack of it on the bay.

To her right is Marjorie, who is 91, and won’t have anyone else tell her otherwise.

But she’s afraid, in fear for her life because there are men on this ward. She wants reassurance from me not that I can give it.

Nò men can come on this ward. You’re perfectly safe. Nò harm will come to you.
All I can think of was Carol’s husband and Stick Man.

I’m deaf she tells me. I can barely hear her so I shuffle closer.
I’m deaf, she repeats. Don’t worry I can’t hear.

There are some men on this ward but they’re in a separate area, I enthuse, just as a male porter comes in to change the bins.

People aren’t nice to me she continues. They say I talk in my sleep all night. But I can’t do that.
Oh yes you can , I thought. Nò more peaceful night’s sleep for me.

And there’d be no late night tv to lull me to sleep anyway. I was at the wrong end of the ward and Betty had drawn the curtains across and muted the sound.

Then Carol’s husband called out.

Chapter 17: Salt and Pepper.

Today I meet the Grandee of rehab. Marjorie who’s 99 with her hundredth coming up on Feb 6 next year.
Never met anyone twice the age of me before.

Shes got an untidy mop of white hair and felt slippers on her feet. Her beige cardigan jacket is neatly buttoned.

Marjorie’s only here because she cracked a few ribs but she still speeds her way into the dining room like a woman possessed.

I’m not sure I’d want to be a passenger in her car judging by the way she steers her walking frame.

People tell me at my age I should try to slow down but why should I? She questions.
I like to be independent.
You and me both, I think.

We’re sitting in the dining room with Sheila and Betty for lunch. There are wet wipes to clean your hands but I’ve long since given up trying to open the foil sachets they come wrapped in.

Marjorie grabs it and with one easy swipe it’s open.

She beams looking for approval. I’m seriously impressed. Her omelette and beans is the first to arrive.

While one of the nurses is squeezing open the ketchup Marjorie has grabbed the salt and pepper sachets. They too are ripped open and spread liberally over her food.

I’ve been age shamed. A woman twice my age acting like she was half mine and more.

As Betty fights with her mash Marjorie leans over to help her. It’s touching to see a woman of almost 100 mother another of 80.

How many grandchildren do you have, I ask her.

Oh, I can’t quite remember that, there are too many, but I’ve got 4 great grandchildren, a couple of great great grandchildren, and one great great great child who’s just one month old.

Five generations in less than 100 years.

I pour glasses of water and we all pretend they contain whisky or gin. Cheers , she says raising a glass in toast.

What are you doing for your 100th birthday Marjorie, I ask.

Having a party of course. Will you come?

Chapter 18: I must go down to the sea again. The lonely sea and the sky.

Two more ladies to talk to.

Emily has just had the toes of her left foot amputated after they went black. I tell her about the mother of a friend who also lost her toes but got walking again after some physio.

She wants to go home but social services need to find her carers, which they can’t right now. So she’s stuck here with me and Marjorie 99.

Opposite is Audrey who fell trying to catch a spider in the bath room that her husband’s carer was too afraid to catch.

The beast was on the ceiling and as she reached up to stick it in a pot she lost her balance and fell breaking her hip.

Her husband has dementia, so he can’t look after her. So she too is stuck here waiting for help.

Marjorie spots the dolphin pendant hanging round my neck. What’s that, she asks.
Any opportunity to talk about the sea.

Dolphins. Sharks.

Weren’t you scared? No.

I couldn’t do that.
Where have you been?

Oh the Philippines, Maldives, Tahiti. All over.
Oh, amazing.

I worked on a dive boat in Tahiti. As a guide.
Incredible.

Have you travelled a lot ? asks Emily, who’s never left the UK.
Yes.

And I want to again.

Well you must. You must get better, so when we leave we can imagine where you’ll be.
Where should I go then?

Oh anywhere. How about South America?
Better start planning

Chapter 19: Exit plans.

Today marks exactly four weeks since I’ve been in rehab and I’m starting to feel I’m making progress.
I can get out of bed so my feet are on the floor ok.

I can use the slidy board to slide over to my chair.

And I’m mastering the machine bizarrely called the Sara Steady which I just think is the silly stand because it seems so silly that it’s so bloody hard to use (And I’m pissed that Marjorie 91 uses it without issue.)

And now here’s when I get mad.

Today I’m told the rehab centre wants to get rid of me by next Thursday.

But I’m not ready I say. I need to be able to transfer safely from bed to chair and vice versa.
I need carers if you need me to leave.

But we need to give you a discharge date before we can start the search for carers. And you can only have them four times a day.
Is that it?
I’m thinking of the times I might need help. It all seems overwhelming.

I’d rather stay until I was happy.

Going home before then and risk falling at home, breaking a bone and ending back in hospital and the whole vicious cycle starting again.

As for improving after I get home? Here I’m getting physio every day and seeing small steps every day.

At home I’ll get physio ‘in the community’ once a week IF I’m lucky.
So that will be 2x a week IF I rehire the private physio I had been using before this.

I can only hope that I’ll retain whatever fitness and strength I have when I do eventually leave.
And the government wants to get disabled people back in the overall community and stop being so reliant on social services?

We can’t if the system is so crippled itself the patients it discharges are unfit for purpose.

Chapter Twenty. Death becomes us.

Marjorie 99 left us yesterday.

She slipped away while I was meeting the social worker.

Never even had the chance to say goodbye.

Her departure kept me awake last night.

Born right before the end of WW1, a munitions worker in London in WW2.

Different times.

I woke today at about four as usual, just as the light started to filter through the skylight above me.

It was hard to see what kind of day it might be without direct reference to a window.

Betty, next to me, had been coughing like she’d smoked 100 a day her entire life and was dying from emphysema.

You could hear her struggling to cough up whatever phlegm it was stuck in her throat and wonder if she was choking.

Sheila and I would check.

She’d so far responded that she wasn’t. One day of course she would be or it would be too late to help.
I glanced across to Marjorie 91.

She lay stock-still on her back. Her mouth wide open with lips drawn back, almost as if she was in rigor.

No sign of any dentures. No sign of any breathing either. Was death was amongst us?
Silence.

I waited.

She’d not been well the last few days.

Often, I’d catch her staring vacantly into space. Hearing too bad to listen to music. Eye sight too poor to read or watch tv.

Is this what death was like? The closing down of each sense one at a time until there’s nothing left? Brain might be there. Body is not.

Suddenly she flinched.

I breathed in relief. Not dead after all.

I determined to find out Marjorie 99’s details so I could make her 100th party.

 

More Tales from the Ward.

Chapter Four: The morning drug run

Pablo Escobar would have more luck shifting this load of narcotics than the nurses today.

Six patients and 90 minutes later and the nurses are still trying to rouse half the patients here.

Christine’s insisting she doesn’t need the mega-dose of antibiotics for her infection because she’s a nurse and she knows it doesn’t work for her.

In the next moment she’s asking to have her appointment at the New Zealand cardiac centre changed, and can she call to change it.

Meanwhile Two-Tone cannot be woken in any way. Her silence the only indicator of her state of consciousness.

Overnight there’s been a huge thunderstorm. The man down the hall has been calling for his wife Carol, roaming the corridors with some determination to find her.

Night Stalker is also comatose having spent the night hovering over the sleepers.
No amount of prodding results in even a flicker of movement.

Christine wants to get out of bed again. A nurse maintains station at the bottom to prevent her. The nurses have swapped her bed with Two-tone so that they’re closer to the action.

Finally, the drug nurse arrives before me and starts to examine my stash bag of medication I’ve been faithfully taking twice a day.

I can identify what I need to take just by looking at the foil strip, but the nurse insists on removing each pill and the replacing the packet into the bag.

I call out the meds by their brand name but that’s no good here. I need to take a course in pharmacology.

Eventually I’m presented with a small paper cup of anonymous white pills of similar sizes. My bi-coloured MS capsule I know. That’s easy. But the others?

If I could out of the hospital onto the mean streets I could get something going here.

 

Chapter Five: Late night tales.

The fading light always seems to herald a change in character of my ward mates.

Two-tone had a new tune. The notes higher and longer. I couldn’t tell if she was more at peace but it was less annoying to my ear. No-one could wake her from her torpor during daylight. Night time really did bring her alive.

The doctors had prescribed Night Stalker a sleeping pill. She’d been unconscious most of the day.

“We need to get you resting at night,” they said. Between the lines: so we can too.

But the drugs hadn’t taken effect yet because I watched as she counted OCD-like the pleats in the curtain surrounding her cubicle.

Once she’d entered she counted them on the inside. Then she’d re-emerge to collect another coffee.

No wonder she wasn’t sleeping. Even the hot brown hot liquid masquerading as coffee must contain some caffeine.

To my left, Christine was beginning to kick off. I’d heard her earlier telling the nurses that doctors thought she had dementia but she couldn’t believe that was correct.
Then she asked when her husband John was coming to drive her home.

Later after fighting off the nurses trying to prevent her getting out of bed calling for John to wake up.

As I tried to sleep, screaming: ‘HELP POLICE.’

Carol’s husband had clearly found her because he was quiet tonight, although I could just hear the sound of a wounded animal whimpering down the corridor.

As Christine kept the nurses engaged Hashimoto decided to make the night even more lively.

Her attempt to get up to shuffle to the loo ending with high speed onto the floor.

Lights on. Everyone awake. No point trying to shut my eyes really.

Later she told me of the loss of her daughter at eight weeks old.

My marriage didn’t survive, she said.

Chapter Six: The NHS diet.

You’d think that for all the lecturing Britons are given as a nation to eat our ‘Five a day’ hospitals at the very least would make a better effort to practice what they preach.

But judging by the vast array of mush on offer on the daily menus it is a physical impossibility to even come close to that number.

The day begins early with an offer of tea, brown liquid masquerading as coffee or hot chocolate which is really just cocoa flavoured sugar.

That’s pretty good, but as it’s sugar it should probably be banned.

Lunch: soup from a tin (high salt content), a salad with plastic cheese (plastic), slices of ham (isn’t that red/processed meat banned too?)

Moving vaguely to the veggie section: jacket potato. But that’s not really veggie because it’s starch.

Accompanied by beans, which should be banned for the methane content, tuna, ditto for the mercury level, or cheese, which should be banned for the cholesterol.

Onto the hot mains of slush: cottage pie, hot pot or macaroni cheese. A possible item with texture roast chicken breast, with the skin off, of course: high fat content.

More potatoes creamed or roast.

But, oh, a possible bit of green: vegetables of the day, straight out the tin.

Dessert more stodge: jam sponge, apple pie, rice pudding, jelly and ice cream.

So, not only do I feel like I’m on a mental ward I may be on a children’s one too

If it wasn’t for the FRESH fruit lady I can’t see how anyone could get a balanced diet.

Which makes it all the more laughable that I had a row with the nurse dispensing meds this morning over a vitamin D pill I keep in my drug bag for simplicity.

We have to prescribe it, she said, and have it in our system.

Why, I asked, I can hardly overdose on a vitamin pill I take because I can’t get outside and get naturally by sitting in the sun.

Later the food lady came round to take my order.

I joked about the appalling coffee.

I can get you some NescafĂŠ sachets if you want. You just have to ask.

Disabled but…

You can’t explain what the problem is

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You may remember the movie The King’s Speech from a few years back telling the story of Britain’s Prince Albert (and later King George VI), who over came a crippling stammer. The movie earned actor Colin Firth an Oscar.

The future king beat his disability with the help of a speech therapist, and the film shows in excruciating detail how he achieved it.

Albert was fortunate enough, as the heir to the throne, to have the help he needed, but in the poorer parts of the world often there’s no-one. Thousands of people disadvantaged by the fact they can’t communicate effectively, regardless of whether their thoughts and ideas are award winning or not.

In Cambodia it’s thought that up to 600,000 people are affected by a communication disability or swallowing disorder, yet until a few years ago there wasn’t a single qualified person able to help them.

Their chances of completing even a basic education stalled because they couldn’t speak or express themselves clearly enough.

Australian Weh Yeoh is trying to change that. A trained physiotherapist he arrived in Cambodia after a year working in China. He hooked up with a local NGO CABDICO helping rural communities.

His lightbulb moment came when he learned children with speech or communication difficulties had no-one to help them.

I was shocked and angered by the fact that there was virtually nothing to help these children and decided that I had to do something,” he told me.

Communication disorders present themselves in a variety of different forms. You might have a stammer, where you can’t quite get the words you want to say out. You might have difficulty pronouncing words correctly, or understanding what is being said, or asked of you.

There can be multiple causes too. Neurological – like Downs Syndrome or autism; physical like a cleft palate or a person might be deaf; or they may have suffered a stroke or sustained brain damage in an accident.

All these things can potentially be helped with a trained therapist and is crucial to allow people to be part of society.

Says Weh: “The impact of communication disorder can range from mild to severe, with issues that can be temporary or last a lifetime. Even mild communication disability can have a serious impact on how a person functions in their daily life, like speaking in class, ordering a meal in a restaurant or finding a job. Communication impairment can impact on interactions at home, at work and socially.”

But rather than do the therapy himself Weh is training up Cambodians themselves to do the job, assisted by volunteers from home. His aim to set up speech therapy as a profession with recognised university courses.

Weh wants to change attitudes that many people have about those who can’t communicate clearly.

“Many people in Cambodia are unaware of this problem. Many of [those affected] are thought by others to be ‘stupid’ and are not allowed the privilege of going to school or interacting with others in their community.

“They are held back as they cannot communicate properly or have trouble receiving communication and the community is unaware of how to accommodate and tailor their communication styles to these children.”

Therapy comes in many different forms – depending on the exact condition.

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Photo credit: Anna Bella Betts.

Something as simple as blowing bubbles can help children like Tai (above) coordinate the movement of her tongue and lips better – necessary for speaking more clearly.

Others like Ling (below) slurred his speech because of the cerebral palsy he has. He didn’t go to school. But after therapy it’s a different story.

“He’s able to communicate better with his family, ride a bicycle, make new friends and attend school. Before speech therapy, many people, including his family, labelled Ling ‘stupid’. Now, he’s second in his class. He also jokes that he now has “too many friends”.

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Photo credit: Hugo Sharp

Cambodia has its fair share of people with physical disabilities – victims of war and unexploded remnants of war – people are still being maimed and killed by the leftovers of conflicts which ended decades ago.

And in reality people with more obvious disabilities – like an amputee for example – get a greater share of the attention. Says Weh: “It’s much easier to give somebody a prosthetic limb than to do speech therapy with them for a year.”

Still that’s not deterring Weh. “At OIC, we believe that all people with disabilities deserve the support needed to live independent lives, even those who have been left behind.”

And there’s more than one way to tell a story.

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You can find out more about the project by visiting OIC Cambodia